European MultiPartner IPF REgistry

Outcomes

Primary outcome:

  • To estimate IPF incidence, prevalence and mortality (biennial and in general) in Central and Eastern Europe

Secondary outcome:

  • To describe basic characteristics (e.g. age, gender, risk factors etc.) of patients with IPF

Tertiary outcome:

  • To describe real life approach to IPF in participating countries from Central and Eastern Europe:
    • diagnostic algorithm
    • treatment patterns and management of patients with idiopathic pulmonary fibrosis
    • treatment outcomes (treatment response, overall survival) and quality of life
    • resource utilization
  • To determine number of patients suitable for enrolment in clinical trials

The EMPIRE (European MultiPartner IPF Registry) project was launched in 2014 on the basis of the Czech IPF registry (initiated in 2012) as a non-interventional international multicentre database of patients with idiopathic pulmonary fibrosis (IPF) in Central and Eastern Europe. Main objective of the registry is the assessment of IPF incidence, prevalence and mortality in Central and Eastern Europe and the determination of basic patients’ characteristics. Information about treatment of patients within the given region is another valuable outcome of the registry.

Registry contribution – Real World Data

The EMPIRE registry monitors the results of diagnostic examinations, treatment information, and ongoing information on the health status of patients suffering from idiopathic pulmonary fibrosis. The registry is aimed to summarize scientific evaluation of the data in a large group of patients with Idiopathic Pulmonary Fibrosis. The purpose of the registry is to collect as many data as possible on the treatment of Idiopathic pulmonary fibrosis and to provide a detailed scientific analysis of this data.

Currently the EMPIRE registry is the biggest database of patients with Idiopathic Pulmonary Fibrosis in Europe. The registry data are highly valuable and can be used for purposes of enrolment into new potential clinical trials aimed on the therapy of idiopathic pulmonary fibrosis. The data may also be of use for health care payers and pharmaceutical companies. Last but not least, so called investigator (doctor)-initiated studies, which create a unique platform for clinical research of this disease, can be performed within the registry.

 

The EMPIRE project presented at the annual ERS Congress

2. 10. 2019 | More information...

More than 20 thousand of experts in the field of respiratory diseases met in Madrid from 28 September to 2 October 2019. Two posters based on EMPIRE data were presented at the congress.


Results of the EMPIRE project in international medical journals

3. 9. 2019 | More information...

Development of the EMPIRE project from a national registry of IPF patients to a significant international project, covering already 11 countries, and a sufficient duration of follow-up of a large cohort of patients have become visible in the form of articles in international medical journals.


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